Tuesday, May 23, 2017

Why Chronic Illness Patients Can Relate to Princess Ariel

“I wanna be where the people are
I wanna see, wanna see them dancing”

If you’re unfamiliar with Disney’s ‘The Little Mermaid’, which is likely very few of you (and if you are, you should watch it!),  it’s about a mermaid who dreams of being part of the real world, above the sea. She watches the real world from afar in her underwater kingdom, constantly daydreaming of growing legs, leaving the sea, and experiencing what seems like true life to her.

If you’re living with a debilitating chronic illness, doesn’t this sound a little familiar to you? I don’t know about you, but since becoming ill a life-changing way, I tend to feel like I’m living in some sort of bubble, or rather outside of some sort of bubble while the real world continues around me while I look at it through a glass wall.

I watch my friends grow up and their careers take off. I see pictures of beautiful smiles on their faces while they’re out having adventures with their friends. I’m watching them graduate and begin living out their dreams. I’m watching them experience some of the pure joy, and the priceless memories that are supposed to come with life.

 “Up where they walk, up where they run
Up where they stay all day in the sun
Wanderin’ free – wish I could be 
Part of that world”

 Sound even more familiar now? We dream of being part of their world.  A world without pain, a world where our bodies function the way they should, allowing us to do all the things we dream of doing. Now that’s not to say there’s anything wrong with living a life with illness. We can thrive exceptionally. But until you find your perfect place in the community, it can really feel like you’re a ghost watching everyone do the great things in life that you’re waiting for your chance to do. Also knowing those exact things may never be possible.

“When’s it my turn?
Wouldn’t I love, love to explore that shore up above?
Out of the sea
Wish I could be
Part of that world….”

But just because those exact same things that they do may not be possible for us, we have our own set of opportunities. We do things people expect us not to be able to do every day. We get to live under the sea, and above the sea, and see things from vantage points that most people never get to see. We appreciate the good that much more. We know that life is short. We watch our friends do the seemingly impossible. We gain compassion, understanding, and gratitude for the little things in life. We see a whole different side of the ocean.

Tuesday, March 21, 2017

When The Oath To Do No Harm Is Broken

It's a Tuesday morning. I wake up, and once I come out of the fog, I remember today's the day; I have an appointment with a new cardiologist.

For many people this would be a pretty mundane thing. Yet all of the sudden I am filled with worry, and sheer anxiety. Seeing a new doctor often makes me nervous for weeks before. Same with seeing an old doctor, with the exception of the few I trust.

Why am I fearful? Doctors took an oath. An oath to do no harm. And I often feel traumatized by my past experiences with them. I have been let down so many times before, in so many ways.

My very first bad experience came right when my symptoms began. I went to my GP at the time, who told me I was just out of shape and that my depression wasn't well controlled, despite me telling her that something else was definitely wrong. This became a pattern, repeating itself so many times until I thought I was probably just imagining things.

People would tell me, "Doctors are just people", and that I shouldn't be so nervous. "They're not Gods!", they would say. But to me, they were. They were the ones who held my life in their hands. My future. They were the ones with the power to change my life, by either fighting and advocating for me, or by shrugging their shoulders at my problem and leaving me on my own. The latter is what happened most of the time.

So I lost faith in doctors, but I would keep going to them. I wanted not only to function and be able to live life again, but to not be in pain every day. Each appointment, I would put up my shield and prepare myself for the blow. Even with a little chance of hope in the back of my mind, I would prepare myself for a painful visit. I did not expect them to help me. I did not expect to come closer to answers. I did not expect them to keep their oath of doing no harm. Because at times, their words replayed in my head for days. At times, I had nightmares about them. At times, they made me want to give up, because of how easily they gave up on me.

So to all you future doctors in med school, please remember that you will be holding someone's life and future in your hands. You will be holding someone's ability to go to school and go to work in your hands. You will be holding someone's freedom in your hands. We're breakable. Please be careful not to drop us.

Thursday, March 16, 2017

Life Lately

Hi all.

This past week has been full of big decisions and there will be many big decisions to come in the following weeks. With the advice and support of my most trusted doctor (my endocrinologist), we have decided that it's time to travel to the US for medical support.

I have felt many times that our medical system has failed me, but hearing my own doctor telling me that feels like a whole other story.  She believes that maybe I'm dealing with something genetic, possibly some sort of mitochondrial form of diabetes. And so she is helping us decide exactly where to go in the United States.

I've expressed this before; Having so many problems in so many different systems of your body gets extremely frustrating when you don't know what's causing it. My doctor told me that even though there may not be any treatment options for whatever I have, I should know what it is. And that meant the world to me.

So despite this system failing me, and us making the big decision to leave the country for help, we're not alone. I have a very small team, but it's a pretty great team. I will try my best to keep my blog updated on this new chapter.

Monday, March 13, 2017

Things I Learned While Inpatient

DKA can happen in a split second. I learned that the hard way this month. On February 28th I was admitted to the hospital in DKA, with a goal of getting me out of DKA, and figuring out the cause for the horrendous headaches and nausea that I've been dealing with for the last month. The stay turned out to be 11 days long, and although we didn't get very far in regards to answers, I did learn some other things...

1. Patience. 

If patience is a virtue anywhere, it's in the hospital. Things happen at a snail's pace. And there really isn't a thing you can do about it. So patience is forced on you. I happen to be the one of least patient people, so this isn't necessarily a bad thing, because I can always learn some patience.

2. Worrying doesn’t change or solve anything.

While you're stuck doing all this waiting, you're generally also doing all this worrying. "Will this consult go through?" "Will this doctor help me?" "Will this test be scheduled while I'm inpatient or outpatient?".... I can go on and on. But the truth is, is that you don't have all the power while you're in the hospital. There are rules, protocols, and logistics in place, and they are what they are. Worrying about them won't change them. What's going to happen will happen, and you have to try not to torture yourself while you're waiting for it! Note to self.

3. Nurses are the best.

 During this stay, I had the most special nurse. She took the time to come into my room, sit in a chair, and genuinely ask how I'm doing. We had a long talk, and by the end she decided she wanted to advocate for me. She did what she could to get me the help I needed while I was in there, without me even asking. And that meant the world to me. It meant the world to me the next day when I was sobbing after a bad consultation, and she came in and said "Talk to your Aunt Maggie", and comforted me and encouraged me. As you can see from one of my last posts, I have a huge appreciation for nurses. This was one of the most incredible nurses I've ever met.


  4. Good veins are hard to find. 

As a pale, young woman, I should have good veins. I should have great veins. However, I just don't. They are thin, they slip and slide when you try to get them, and they have no blood return. Nurses hate taking blood from me, and they especially hate inserting IVs. My first IV was hard enough to get in that they had to bring a guy in with a special ultrasound-like machine to find my veins. It was super cool and worked like a charm. However, while I was there, my doctors wanted at least 2 blood tests a day. The nurses were not very happy about this, because for some of them, I'm an impossible stick. They would ask the doctors repeatedly "Are you sure we really need 2 blood tests a day?", because it seemed that this was torturous to them. Needless to say, my arms are black and blue everywhere.

5. Canned peaches are really good.

Not much else to say here. The rest of the food is nothing to write home about.

6. These are the times when you find out who really loves you. 

 Being in the hospital sucks. It's scary, it's frustrating, and it's boring. Your friends and family who check in on you are your world. 

Sunday, February 19, 2017

A Love Letter To Nurses

Dear Nurses,

Sometimes we wonder if you know how amazing you are. You work incredibly long hours. Not only do you put up with patients who are rude to you, you still put in the effort to take care of them because that's what you love to do.

You are the heart of the hospital. You are our advocates when something is happening that shouldn't be. You go above and beyond to keep us at ease. You barely have time to eat your own lunch, but make sure that we got ours. Your feet are hurting and you’re tired, yet the most important thing to you is to make sure we’re the most comfortable we can be despite the circumstances. You are not only our caretakers, you are our friend. In a cold, scary hospital room, you are the warmth and the light.

You are kind to the elderly who won't stay in their bed even though you keep telling them not to get up. You are kind to the kids who won't stop crying. You are even kind to the patient who soils you in their bodily fluids. Patients may yell at you, treat you like a maid at a hotel, and expect you to know the answers to everything, but you still keep a brave face. You are some of the most fearless people we’ve met. 

You work such a long shift, sometimes even a double, and we look at you and wonder how you're still on your feet. You might be working all night and come 6 AM, you still come wake us up with a smile. You likely see heartbreak on a daily basis, yet you stay strong for us. You are a huge part of the reason we have the courage to keep fighting whatever we are fighting. Without you, we'd be lost.

It takes the most special type of person to be a nurse. Thank you for being there for us during some of our hardest times. They are a little bit easier to get through because of you.

Tuesday, January 31, 2017

Life Lately

So 4 years in and… we’re still looking for a solid diagnosis. It does get tiring. And there are so many nights where I feel like giving up. But I know I have to keep fighting for answers. Sometimes we’ll get an unexpected clue. And you never know when that clue will lead to a discovery.

I’ve been fighting some sort of virus for the past week, but prior to that I was dealing with some serious fatigue. I always have had extreme fatigue, but the past couple of weeks, I’ve just been so drained of energy. I also had a bladder flare up and went into retention. I was taught to self-catheterize about a year ago, but I’ve tried time and time again and failed. Some sort of wave of determination came over me, and I finally successfully did it. It was a proud moment (though I’m annoyed with my bladder), and it’s a relief to know that now we won’t have to go to the ER for this. My mobility isn’t great but isn’t at an all time low. My tremor has been a bit more bothersome than usual lately, maybe because I’ve been using my hands a lot to type or paint. I’ve been continuing with rehabilitation at Constance Lethbridge even though I had to miss this week because I wasn’t doing well. I’ll just have to work doubly as hard next week, though I felt so bad for having to cancel!

I recently went for blood tests which are still in-lab, and I’m waiting for a call for an MRI. Will these yield any answers? Who knows. I tend to be pessimistic at this point, which I know isn’t good, but I try to protect myself from disappointment. Luckily today I saw one of my doctors who actually has an interest in my case and is always caring and helpful, and that lifted my spirits.

I might be going to see a motility specialist in Ottawa who was recommended by a friend for my gastrointestinal issues. My doctor today wrote us the referral, so we’ll just have to figure out the logistics between Ontario and Quebec healthcare.

And that is all that's new in my world. Thanks for following along and supporting me through this long trek to answers,

Monday, January 30, 2017

Dear Dr. Z

Dear Dr. Z,

It's a sad reality, but young people with multiple chronic illnesses are used to being stigmatized, and treated as if we shouldn't sick at our age. As if somehow this is our doing.

So on this Monday afternoon, when my Type 1 Diabetes had been going out of control for over a week and my nurse told me that it was time for the emergency room, I thought I knew what to expect. I expected to go in, maybe get scolded a little for having such bad blood sugars (even though we didn't know why they were haywire and I was doing everything I could to get them down), to be brushed aside, and to be made to feel like an inconvenience for whoever had to treat me.

Instead I met you. You came and told me that you thought I had a kidney infection based on my tests so far, which is why I was in DKA, and then you asked some questions. These questions prompted my other conditions to get brought up. You asked me when I was diagnosed with Hashimoto's. The fact that I have endometriosis came up, and then the fact that I have a neurogenic bladder came up. The list kept growing and you had to keep pulling my chart back out. And then you said "Wow, that's a lot of stuff". I laughed and said yes, expecting for you to tell me I'm too young to have all of that, like I was used to hearing. Instead, you said, "You're a very strong woman for dealing with all of this, I want you to know that." How can I describe how I felt after you said that? Shock? Gratitude? Overwhelming emotion? There are no words. Because your words today made me feel like a human instead of a lab experiment. Your words showed me that there are compassionate doctors out there who understand the struggle of being young and chronically ill. Your words are ones I will remember for a very long time. Thank you for making me feel strong when I felt anything but.

 So though I don't know if you'll ever read this, thank you Dr. Z. You made a difference in my life today.